Select Committee on Health Written Evidence

139. Evidence submitted by Nora Warner (PPI 19)

  I should like the following points to be added to the weight of evidence to be presented to the Health Committee. Although I am a member of Eastern and Coastal Kent PPI Forum and lead for Canterbury and Coastal Locality Group, these are my own views and do not necessarily reflect those organisations' attitudes.

  1.  The purpose of patient and public involvement is to redress the balance. The NHS does not belong to the Department of Health nor to the staff. Ultimately it exists to serve the public who, through taxes, are its paymasters. It was high time they had a voice in decision making.

  2.  We bring a different perspective to plans and problems and are able to cite our own experiences as patients, carers or simply recorders of other members of the public's views. Forum members devote many hours a week unpaid to PPI work. The only direct reward we get is to have our travelling expenses reimbursed. I don't charge for phone calls or postage. I use my own stationery and IT equipment. We cover our own eating out expenses in order to attend meetings set at times that suit paid members of staff. We bring expertise acquired in other walks of life and we don't complain if we aren't even offered a glass of water, let alone a cup of coffee and a biscuit. I reckon that's good value.

  3.  Who really knows why reform was felt to be necessary? Did Forums ask too many awkward questions? Our total independence meant we couldn't be cowed or bullied. There have been claims that we are too white, too middle class, too old ..  . who else has the time, the income and the experience to devote chunks of their free time to wading through lengthy and verbose reports; sitting through and making sense of countless meetings; instigating inspections; calling PCTs or Trusts to account; carrying out surveys; suggesting solutions to problems ... We keep hearing about hard to reach groups who need to be heard. Any one thought that they may not want to be reached and have nothing to say?

  4.  I believe that there should be a PPI presence at every decision making level. To remind those who talk of beds that they are occupied by thinking, feeling human beings, who shouldn't be moved about like chess pieces. To say and keep on saying: "But what will this actually mean for the patients?"

  5.  LINks ( who thought up that excruciating name?) should build on the relationships forums have already established both with the public and their local NHS contacts. The big advantage will be bringing together social and health care under one "watchdog".

  6.  They should be totally free from local authority interference. Funding should come directly from DoH.

  7.  No empire building.

  8.  Actually finding people willing to serve is likely to be a problem. One of the strengths of the original forum set up was that people felt they could influence what went on in their own patch. There is understandable reluctance to drive—in one's own time—two or more hours to the other side of a local authority area, especially at night and in the winter. It takes a long time to understand how the NHS conducts itself—just ask the various Ministers who have struggled to get on top of their briefs. A pity if that hard won knowledge is thrown away.

  9.  It is vital that the forums' statutory powers are retained by LINks. Surely we believe in openness and our inspections produce helpful suggestions as well as criticism.

  10.  The Healthcare Commission is on record as saying it wants a closer relationship with PPI, irrespective of whatever label it is currently wearing. Forums may be checking up on apparently small matters: distance to disabled parking bays; door width and ramp position; surgery opening times; telephone call charges; location of toilets; signage; menu choices and help with feeding ... but ironing out such apparently minor inconveniences can make a great difference to the patient experience.

  11.  There was some resentment that forums apparently were seen as unpaid research assistants to OSCs. A better balanced partnership should be the aim, one that has some clout when it is needed.

  12.  Our forum has always been welcomed at PCT Board meetings. LINk representatives ought to have the right to offer their views and to vote when appropriate.

  13.  Our remit was not to take up individual complaints. Instead we became involved if a situation developed that affected a group of people. For instance, the closure of a clinic without warning or moving the out of hours access point without consultation. This seemed a sensible approach so that we did not overlap with the PALS service or patient user groups.

  I hope these comments are useful

Nora Warner

3 January 2007

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